Lyme&Co stole my dreams in more ways than one...

For as long as I remember (likely ever since acquiring lyme & co infections) I generally do not dream. It's not like I don't remember my dreams--I literally don't dream. Now, there may be no scientific way of knowing this but I'm just pretty darn sure, reinforced by the fact that I almost ALWAYS have weird dreams when I run a fever and nearly always remember them. And they are STRANGE dreams.

There is one exception--and that was the week following 9/11 (I was living a few blocks away from ground zero in NYC at the time so that whole experience was traumatizing and I had pretty bad nightmares... then they stopped and so did the dreaming).

What gives? I've not come across any logical reason for this in my research. The only suspicion I have is there is some disruption to that deep sleeping function with a low body temperature, which I always have and most hypothyroid and lymees have, thus the dreaming when I run a fever and I'm sick.

Anyone else have weird REM activity?

-p

Interesting...

I never knew anyone who "enjoyed" sleeping. That is a gift. But sheesh--gagging and coughing? That sounds horrible and was probably a little scary for your hubby.

I don't think I slept well as a kid - I think I struggled w/ EBV a lot and I had a lot of TMJ issues/grinding teeth at night so I often woke up w/ nasty headaches. By the time I was in h.s. and up until mid-40s I have lived a stressful life (unaware of it when I was younger but certainly aware of it as an adult). Family life was just stressful and then I went into a tough program in college. But I also now know that exacerbating the stress was that I've always had a neurotransmitter imbalance and adrenal fatigue and my brain was going 300mph even when my body needed to stop.

So, I was ALWAYS pushing my body's limit---staying up way too late because I was working, studying or playing hard (always had a reason) and waking up early (against my will) because "there was some place I needed to be". I was really hard on my body and did not get anywhere near enough sleep but I think if I did allow more time for sleep, I likely wouldn't have been able to actually sleep because I could never calm down my brain.

I was also an insanely light sleeper - would wake up at everything. Had a tough time w/ sig others because any change in his breathing would freak me out. My sister has sleep apnea and I could not sleep next to her because I'd be awake all night waiting for her to breathe...

Anyway, I got really sick a couple of years before I figured out it was lyme. During this period I experienced severe insomnia and half the time I could fall asleep at bedtime, half the time I couldn't. But ALWAYS would wake up a few hrs later and could never return to sleep. So for nearly 2 yrs I averaged 2-3 hrs of sleep every night. This nearly killed me.

Then this past year I finally powered down, stopped working and traveling and started focusing entirely treatment. Took a long time but I'm finally sleeping somewhat normally. I fall asleep within a minute or two of lying down--so fast. And about half of the time I wake around 3am to pee and then I fall right back to sleep. And then I can usually sleep no more than 6 hrs total.

Up until I started using LDN I would have horrible muscle pain at night, spasms that would wake me up in a fright or panic... but that's much better now.

A few months ago I finally connected having noise around me (usually some program I'm streaming from the internet) all the time, and I fall asleep to it--to my attempts to drown out the tinnitus. I know it's bad to have anything on when you go to bed but it's the only way I can fall asleep. Whatever it is, it stops when my computer goes to sleep in an hr or so.

I almost never nap---until recently. The vanco is stirring up viral loads so I am now sleeping a couple of hours during the day and my regular 6 hrs at night. And, with the fever I had the other day I had some CRAZY dreams.

I THINK I'm comfortable in bed--I have an amazing bed and if I weren't comfy I don't think I would fall asleep so quickly. I don't have soreness from sleeping in awkward positions or anything. But I almost never feel rested in the AM. Now that I'm not working I don't set my alarm and it's rare that I don't wake up between 7-8.

Sorry - probably more than you wanted to know... but it's interesting because I think it all points to the fact that I am still not really sleeping "well".

-p

I think that makes a lot of sense P. We are in the furniture business so I have a what would be a very expensive mattress. Pre Lyme I was diagnosed with serious cervical spine issues that required surgery and other spinal issues that couldn't be corrected by surgery so a top of the line mattress was a must. Being comfy in my bed has been a huge help.

I found that before and early in to treatment I had aggressive dreams. They weren't nightmares. I would have arguments with people in my dreams. My sister was frequent visitor in those dreams, she drives me nuts.
I also dream less. My brain either doesn't shut down and random nonsense ricochets around for hours for no reason or I sleep really well and wake up hours later surprised how much time has passed.

I think it's just another "it makes no sense" aspect of this disease.

Girlie -
I'm now remembering you when you first joined the forum--I remember some of your posts about your father and how difficult a time that was. Seems like a lifetime ago.

The way you described how you pushed your body is too familiar... I'm so glad that we've both slowed down. We wouldn't be where we are in treatment if we hadn't. And I don't know about you, but only in retrospect did I really "get" how crazy and stressful and harmful that pace was. No wonder we got sick.

I never used to nap and finally figured out why--I was scared I wouldn't wake up and I'd sleep all through the night. And that's what has happened a couple of times! But that is also my body telling me it desperately needs sleep. Thankfully my adrenals have (mostly) healed and my brain is no longer in overdrive. But I gotta figure out how to sleep more peacefully. Maybe it's psychological thing... I'm sure the hell not happy when I'm awake so maybe that's carrying over into sleepy time.

jrpsf-
I LOL'd at your description of arguing in your sleep although it's probably a little stressful for you. When I was younger I would have a recurring dream that my sister and I were standing on top of the Empire State Building---like skyscraper on a tiny balcony that had a 12" railing... and she kept pushing me over the edge. No, we don't get a long LOL

bluelyme -
I have to say that sometimes your posts are a little poetic. ;)
Any reason or triggers for your nightmares?

-p

Interrupted sleep (waking during the night, sometimes multiple times and sometimes with the inability to fall back asleep)....along with waking early unable to fall back asleep.....and having trouble falling asleep due to racing thoughts can all be caused by hypothyroidism.

I know you take thyroid meds, P but, what do your Free T4 and Free T3 levels look like?

It was good to read that you wake between 7-8 without an alarm.

Been there, done that with the stressful lifestyle. I cleaned up my act in that regard when thyroid disease hit in 2007. It's too bad that some of us learn certain things the hard way.

Piroette,I lost my career ,and someone very dear to me and have abandon most of my life pre lyme..i day dream of a borrielia center as big as a hotel with every modality under ther sun ...

Pirouette and Bluelyme - I am so very sorry for all that you have lost from being ill. It brought tears to my eyes.

Bluelyme - i also dream sometimes about a healing centre that is covered by health care insurance...where we are pampered...taken care of...and where we feel safe when we herx.


I have suffered loss, too - one thing being my 'identity'. I don't really know 'who I am'...where I fit in anymore.
I am so very lucky that my husband has stood by me (although there have been times...when it's been tough), and most of my friends...and all my family.
I hate that I have to 'be careful' now...when I'm asked to do something with friends...I always hesitate...as I never know what kind of day I will be having. I often say 'no' to the invite.

Both your posts brought tears to my eyes.

And, Pirouette - I recently lost my little orange kitty...tragically and I still cry about him...my baby. We are looking for another one.

Sorry - I forgot one thing on my list. My career, which I spent 20 long, hard years and countless sacrifices to build. Can't even think about it.

But the loss of identity is worse--that's a good way to describe it Girlie (I don't know why but I have such a hard time describing things so I have to borrow from other people).

But yes, it's like we don't know who we are anymore. Our connection with our past selves is broken almost. The personality traits we identified ourselves by disappear or change... we have a different connection with our bodies. And all this affects how we connect with other people. I feel like a stranger in my own body.

I used to love people - was very sociable and had a ton of friends all of the country (I had moved a couple times) and all the way back to high school. Now, I can count the number of people in my life on one hand. It's mind-blowing. Chronic illness is a sure-fire way to weed out the marginal "friends" in your life but it hurts so much to have lost so much and not be able to connect with people.

I haven't heard from anyone in my family (except my mom) for months... people tell her they're "thinking of me" but can't seem to manage actually reaching out to ME. I've heard from no one on my dad's side of the family for nearly a year. Nothing on my b-day or at Christmas. Throughout my adult life I have spent hundreds of dollars to fly halfway across the country at a moment's notice for their "emergencies" but when I need it--there is no one there. How do you not grow bitter?

Close friends and family admitted to me they thought I was just a hypochondriac. As if that was the ONLY explanation. Now that they know what's really going on with me... where the hell are they?

My friends have all moved on with their careers and new husbands and new families and new houses and happy, fulfilled lives (actually, they did this a long time ago--it feels like my life is still suspended as if I just turned 30, which is when I became infected)...

And I'm not proud of this but I grow pretty tired living vicariously through their normal lives. I have little to share with them except my misery and who wants to hear that? And I usually don't even have the energy to share it. So, one by one they disappear. I find myself questioning our friendship, wondering why I was duped into believing this person cared about me, despising them for their selfishness and shallowness, being embarrassed for my lack of strength to be interested in all the ways they get to live that I don't--for the sake of being hopeful if nothing else. I withdraw even more. Just so desperate to get past all this.

Anyway...

Girlie -
one thing I do regret is not communicating better back when I would receive social invitations. If I were to do it over, I would try harder to explain that "I really want to go, thanks so much for including me, I just need to take a rain check--trying to manage a tough cycle of my treatment but please, let's make plans for next week--I really want to see you/everyone..."

I feel that if I had communicated better I wouldn't have been so misunderstood. Maybe. Who knows.

The loss of a kitty----so tragic! A couple of people tried to get me to quickly get another one and I couldn't. I probably should have. She was with me for 22 yrs. I can't have pets where I live now, probably just as well because I can barely take care of myself. The neighbor cat thinks she lives in my back yard so she keeps me company every now and then. A new kitty might be a good way for you to celebrate the end of your treatment and moving on to a new life!

-p

sweetpea--
What does "FYI-a symptom of KPU is not remembering your dreams." mean? Sorry - not following.

I'm also sorry that you've experienced all these familiar disappointments and frustrations and injustices, too. But I sure love your husband. He gets a hero cape!

-p

LOL - I was confused by the KPU part, not the FYI part. Thanks so much for posting the explanation--never heard of KPU. I have all of the other sx you list so there's gotta be something going on there.

jrpsf -
Thanks for the link... ;)

-p

Yes thank you pirouette, girlie ,and sweet pea.maybe open eye productions can do one called 'under our hearts' to follow the emotional stuggle of a borreliosis patient make for good tragedy..and maybe some comedy ..i sometime tell myself the pain and loss and pain is not real and pales in comparison to being say crucified or chemo...somedays i long for that as it is an end and at least people could mourn who i was not what i have become..thats why i am in sorrow covered in sackcloth and ashes...

I have never thought about my dreams and do I dream, but now when I think, as my condition got worse, I stopped dreaming. Before Lyme I had dreams almost every night, now not at all.

I can dream again. Drum roll....... Hope this lasts. I told that to a few people in real life and they were like "you dream.......so what". So I decided not to explain it to them.

A few days a week, I can now remember dreams...as they're interrupted by the alarm clock. I dont enjoy going to bed, but I do enjoy sleeping in on weekends. Dreaming was very rare for me for at least ten years. I didnt dream at all for one year on ABX- my brain would not completely shut off. I still have to sleep with some white noise (a floor fan), and magnessium + ibuprophen PM or benadril.

In the past, ten to twenty minute "power naps" kept me alive for 20 years. They were so refreshing, and I never over slept. It was more of a brain and eye "time out" than a deep sleep. I mostly ate work lunch alone so I could do car power naps in other parking lots ects.

I lost a best friend to this. He's to stupid and impatient for me to explain what lyme can do to people. I gave up and just figure he's a dumb ***. On the other hand, going to have a few beers with a bud from the past this week. Yes, I can have a few beers again without candida raging the next day. Never can tell what life has in order for you..